I had my now 6 monthly blood test the other day with a follow up call from a haematologist a few days later. My results were all ok except for my ferritin, which at 3000, the Dr said was on the high side and booked me in for venesection once a month for the next 3 months. When I asked why that might be she said it was due to all the blood transfusions I'd had prior to, during and post SCT. That makes sense, but I am puzzled as to why this did not arise or come to light some time ago as I had my SCT almost exactly 3 years ago and the last blood transfusion some two and a half years ago. I can only think that the haematologist, being a new one for me, has a different approach to ferritin levels. I should have asked during the call but as always I tend to think of questions to ask afterwards.
High ferritin post transplant: I had my now... - MPN Voice
High ferritin post transplant
Normal ferritin value range varies by lab and by gender. Typically the top of the normal range is somewhere between 300 - 336 nanograms per milliliter (ng/mL) for a male. Something lower for a female. I am wondering if the 3000 number you were quoted was using a unit of measure other than ng/mL. It would not make sense that you would have a 10X higher level than the top of the normal range. It also seems a bit odd that this is an issue 3 years out from your SCT. I would definitely be seeing a clear explanation from the SCT Specialist. Not sure if that is the doctor who called you. I would check in with the right expert to ensure you understand what is going on.
Please do let us know what you learn.
Thank you for replying. I spoke with one of a CNS at the QE Birmingham where I had the SCT and she said that this was not unusual and that post SCT patients will have delayed venesection 2+ years after the SCT and this done out of precaution to ensure that things have settled down which they have.
This certainly seems odd that it has only now been picked up. My ferritin levels hover between 1300 - 1500 again due to blood transfusions. I haven't had an SCT but transfusions for many years. The form I take to the practice nurse for blood tests rings ferritin as an additional test and if it isn't I remind them to include it. Could it be it just wasn't being tested for some reason? Certainly the print out has 20-300 ug/l as normal levels and my result is in bold and marked high.
When ruxolitinib caused even worse anaemia I was started on EPO injections and when they got my hb to a reasonable level venesections were started. In my case it's a bit like snakes and ladders because I then become anaemic again and it takes quite a number of weeks for the levels to rise and often the next venesection is delayed.
Hi Tim, perhaps covid concerns/resourcing in the hospital system has influenced the timing. It did mine in NZ. Would be nice if you got away with only three venesections. A more common number seems to be 10 to 15. My ferritin level was 5306 when I started getting venesections. Have had 55 fortnightly venesections (430ml) so far, ferritin level is down to 989. I always make sure I am well hydrated on the day of the venesection. They have ticked past surprisingly smoothly. Best wishes, Simon
I had 30 packs of blood during my SCT (non before) and my ferritin levels were 2400 just after. I have as told that they should have been 50-ish. It was recognised and I was told it would be tackled when I was circa two years out. I then had monthly venesections for 14 months but they stopped with ferritin in the low 100s with an expectation they would normalise.
Thanks for the reply. From what you and Simon have told me it seems quite likely that I'll be needing more than just 3 venesections. I could only guess at the number of packs I must have had 2017-2019 but definitely quite a lot more than 30 so I guess I shouldn't be surprised that my ferritin levels are high. Just a totally unexpected intervention, and slightly puzzled as to why none of the consultants previously mentioned that venesection would likely be needed at some point.
I have not had a transplant but I have been increasingly transfusion dependent for the last nine years. I have found that different doctors take a more or less proactive attitude to raised ferritin. Mine got to 11,000+ before any action was taken. I spent about 4 years using desferioxamine subcutaneous pumps and got to ferritin just under 4000. However, this year with so many hospital admissions and not having a big enough fridge while not at home during bungalow repairs to store the pumps my routine went to pots and ferritin is now back over 7,000. I have now started taking defersirox (Exjade) which is an oral medication that I’m praying I can get along with
Those who know me know I try and find the levity in every adversity. I have found that with very high ferritin when I bruise (often badly due to low platelets) as the bruise heals it leaves a brown stain presumably from iron under my skin lasting for years. As I’m very fair skinned I’m wondering if I could actually go brown when the bruises eventually join up!🤔😂
I hope you can restore your ferritin to normal without too much trouble.
Best wishes, Jan
Decisions, decisions 
Worried about drop in platelet count
high platlets 
